Opportunities...

I'll prep you all up front, this post is about mushy touchy feel good stuff concerning people with perceived and real disabilities. That's my disclaimer, not that one is really needed. I came across a story last week that I thought was amazing and added to my already strong hope and faith in good people. It's a story about a teenager with Down syndrome who was simply given various opportunities throughout his life, and the results of being given those opportunities to himself and others (the young man's mother works at my firm in our Philadelphia office, that's how I came across the story). I've attached a link to the Sports Illustrated story, and that's just one of a dozen media stories that have been done on him. The young man's name is Brad Hennefer, and if you have a few minutes I would encourage you to click on this story link and read his story before continuing on (my thoughts for the rest of this post don't make alot of sense outside the context of the story in the link). Here's one other story link from another local media source.

Good stuff, isn't it. Similar to what Coach Valore said in the one story, our family has been very enriched simply having our little Ammon around.

Mixed in with all of the perceived negatives and trials that come with a disabled child, there's alot of good, alot of hope, and alot of blessings. I realize that Ammon might not be a high school basketball star, but I hope to work as hard as I can to give him those opportunities and I am very appreciative of those that do the same. He has successfully grabbed onto so many opportunities already. I think back on some of our initial hopes for him. When he was born there was the possibility that he could not see, but we would hold him and talk to him in the NICU and he would turn his head and look at us. Turns out with some glasses his eyes are fine. You'll remember he completely failed all of his hearing tests, but at home we would call his name out from around the corner or sing a silly song out of eye sight and he would smile. Turns out that his hearing suddenly became fine. You'll remember that he had several holes in his heart when he was born and his pulmonary artery had a thick wall (possible surgery was in the works), but a while before his 1st year birthday the doctor said the holes had disappeared and his heart was fine. His physical abilities continue to improve and I know that he will walk someday. There's a dozen other things I could mention about Ammon, but I imagine that someday he might say to me something like, "Dad, why do you gotta tell people about all that personal stuff" (he will be right, but isn't that a parent's luxury, sort of like showing his baby bath pictures to his first girlfriend). Opportunities sometimes, for some people, take alot of work, maybe even years of work. We'll work as hard as we can to prepare Ammon physically and mentally for those opportunities (I'm positive he's already good to go spiritually); the opportunity to walk, the opportunity to talk and communicate, the opportunity to learn and grow, the opportunity to play catch, to dance, to run, to go on a date, to come with us on a mission. Then we can also hope in good people to help these opportunities be grabbed. I think back again on the quote from Coach Valore:

"It's been a very enriching experience for me, and for everyone who comes in contact with Brad," Valore said. "I think it comes from an understanding as to how hard Brad's worked through this. It's made me a more understanding person, because it's the first opportunity I've had in this situation. Working with Brad, it's enlightened this team and me immensely how a young man can work and overcome adversity. Brad makes everyone around all better people, whether it's during practice or during a game. It is true love."

Coach Valore has it all right. It's not just Ammon that needs to seize opportunities, but because of people like Ammon we all have very special opportunities too.

Up the Stairs and Body Beautiful Program...

One of my teams at work is currently having a weight loss challenge. Supposedly my current “fully clothed with no shoes on” weight of 193 is about 10 pounds higher than my ideal weight (don’t worry, there will never be any “before” and “after” pictures posted to this blog, or any other blog for that matter). In order to win the challenge, or at least not have to pay any money to anyone, I simply need to meet my weight loss goal (there will be an overall winner based on percentage weight decrease, but they only receive winnings from those people that don’t meet their goal). Considering it is busy season and our opportunity to do anything besides work is pretty much zero, I’ve inspired the team to join me in climbing the stairs twice a day. Considering we are on the 16th floor this has turned out to be a phenomenal workout in a fairly short period of time. We have a couple of “young pups” on the team that are fresh out of college and still in pristine shape. I know my limitations and most of my coworkers limitations, so the first few times we climbed the stairs my mantra for myself and the older (i.e, out of shape) team members was simply “slow and steady.” We enjoyed a great deal of satisfaction to see the young ones quickly disappear up the stairs only to meet them on the 16th floor nauseous, beet red, and slumped against the wall (our condition wasn’t far behind them, but it was very gratifying to see the young ones humbled). Now that we have been climbing stairs for several weeks the climbs are easier, but still grueling. We try to mix it up by increasing the speed, doing two stairs at a time, and never touching the handrails. However, today at lunch while we were all putting down some cake and contemplating another piece, I came to quite the epiphany concerning this whole “body beautiful” program. Fortunately for me, my metabolism is such that I haven’t gained any weight in about 4 years, despite the out of town meals and minimal consistent exercise (I expect a lot of hate mail for even making that comment). So, it’s not so much that I need to lose weight when I can very easily maintain my current weight; instead all I need to ensure is the people on my team simply gain weight or at least maintain their current “larger” status (that’s a pretty negative thought). Don’t worry though, I’m still doing the stairs twice a day and encouraging my team members to join me. However, now my mantra as we climb the stairs has an out of breathe saying tagged on the end of it, “slow and steady, slow and steady; I look good when you look big.” I’ll keep you posted on how the whole body beautiful program shakes out.

Ammon and the Hospital...

Ammon is Home! Since the posting below of our excitement and anticipation of a new little girl in our family, our current youngest one took a turn for the worst. Valentines Day was so much fun! We had a candlelight dinner with the boys at home, we had found out about our little girl, and Coleson appeared to be getting completely over his cold. However, Ammon had started to cough on Thursday, so on Friday we took him to the doctors as a precautionary measure. By Friday afternoon Ammon was checked into the hospital and ended up staying there for five days. This is becoming an annual tradition for this kid (we hope to break this tradition next year by simply sending the entire family to California for the three months in the winter; I’m sure this is great news for Maga and Paki). Turns out Ammon got hit with a double diagnosis of RSV and pneumonia. How this happened we really have no idea, we have always tried to be so careful with him. We assume he either got it during one of his therapy sessions or just bad luck.

Summer was a trooper and spent three of the four nights at the hospital, while I barely managed the Saturday night shift (unfortunately, busy season is still chugging along full bore at work). Going on less than an hour of sleep per night I still don’t know how she did it, I am so impressed with her. Family and friends were awesome to say the least, and several nights we were well fed and Coleson was well cared for during the day. Sara was an especially good friend to Summer and Ammon, by coming up to the hospital and simply holding Ammon for several hours during the day so Summer could take a much needed break.

Ammon was a powerful reminder of what it means to be of good cheer and persevering. Despite the fever, pains, and other ailments he still was laughing and smiling early on the process. By Sunday his demeanor had become more subdued primarily from exhaustion and dehydration, and Sunday morning they added an IV to his treatments. I’m so grateful for all the answered prayers and blessings on his behalf. Coleson would regularly come running into the living room from his bedroom and ask if Ammon was better yet, because he had just finished saying another pray for him in his room. I’m still sometimes surprised by the great love that a five year old has for his younger brother, and the lengths and sacrifices he’s so willing to do to show that love. Gratefully Ammon is on the mends and we were able to bring him home late Tuesday night. We were able to talk the doctors into letting us bring him home once the fever broke for good. We are old pros when it comes to oxygen tubes, oxygen saturation and heart rate monitors, breathing treatments, etc, etc; bring it on is what we say to those things now. We got Ammon to bed a little before 11 on Tuesday night and he slept through the night (we knew we had made the right decision). They didn’t bring us a normal oxygen tank for Ammon, instead it’s a large machine the size of a TV that somehow takes pure oxygen out of the air and sends it down the tube. It’s not overly loud, but at night I keep thinking that someone is running their lawn mower, than I realize that it’s still winter and still the middle of the night (I guess these various sounds at night are starting to get to me). To me the machine sounds like Darth Vader suffering through an asthma attack.

Again, we are simply excited and grateful that Ammon is home, he is still our little miracle boy.

It's a ..... girl--well on the way

Today I went to the perinatologist to get a thorough ultra sound. Everything looks perfect. The baby is right on schedule-19 weeks- and the best news, it's a girl-for sure. Everything was checked twice just to make sure. So my back pain is explained and hopefully we can have a full term, healthy baby! The due date is between July 7-10. Brian was so excited when he heard the news at work that he shouted in his office, with the door closed, but he was still heard throughout the building. Coleson guessed it was a girl before I went, so when I told him it was a girl he said a quiet "Yes" and back to playing with play dough. He already knew so it wasn't a big deal he told me afterward. Ammon laughed everytime we said "baby", so I think he's excited too. I am so grateful to hear the baby is healthy and am so excited for a girl.

Babysitting and Gas Cards...

Busy season has hit our family full on for the past week and a half, and it will continue for the next two months. There is usually a partial sense of exhilaration and accomplishment associated with the start of busy season, and those feelings are there this time as well. However, certain circumstances at work are making this season especially trying. In light of that I wanted to write a few things about my family and other things that always seem to lift me up. I’m not the type of person that gets sad or frustrated when my family is doing fun activities while I’m working my way through seemingly endless issues late into the night (I realize that it is not always fun and games at home either; Summer always works much harder than I ever do at my job). I actually feel a lot better knowing that Summer and the boys are having fun together, experiencing joy, and are just plain happy. So here are a few stories that brought a smile to me recently and revived memories of so many good times from before.

The weekend before busy season started Summer and I wanted to make it to the Temple to recharge the best way we know how. That Saturday morning Summer went for a run at the community center and Coleson eagerly went with her. Coleson might have run about a mile before heading down to the basketball courts to watch some kids from our neighborhood play on one of the community teams. He sat next to KyAnn, who is a wonderful woman that lives down the street from us. When Summer came down after her run, KyAnn asked her when we would be dropping the boys off. Perplexed, Summer asked her what she meant. KyAnn replied, “Coleson told me you and Brian were going to the Temple and he asked if he and Ammon could come over to our home and have us watch and play with them. He’s got it all set up; so again, what time are you dropping the boys off.” Yup, Coleson set it all up, not much gets past this kid. That night we dropped the boys off at KyAnn’s house and they had a great time playing with everyone. KyAnn has a little girl that is about 3 ½ years old, Shayla. Shayla loves to play with Coleson, and when she was in nursery at church she would always talk to Ammon. She recently received a new baby girl doll. Apparently, she likes Ammon so much that she named her baby doll Ammon. KyAnn tried to explain that her doll was a girl and Ammon is a boy name, but that didn’t matter to her; the little doll that she loves to play with would be named Ammon, case closed. When we picked the boys up that night they were both so happy and had had a wonderful time. We were there for over 20 minutes just watching Coleson and Shayla run around the house, with no awareness that it was well past bedtime. As we left that night I was reminded of the goodness of the people that we are able to associate with on a daily basis, and this night also reminded me of the specific goodness this family has shown us in the past. Here’s the specific experience this whole night reminded me of.

About a week and a half after Ammon was born over two years ago, Summer and I were at home when a knock came at the door (we received a lot of welcome knocks on the door after Ammon was born). KyAnn also has three teenage daughters named Jill, Carrie, and Paige; and they were standing there on our doorstep. One of them handed me a thick envelope and simply said something to the effect of, “hope all is well, we’ll see you later.” Before I could really say anything more than thanks they were off the porch and heading home. I assumed the envelope contained birth congratulations or a get well soon card for Summer (it would still be quite some time before Summer would be able to do anything physical or quickly). I gave the envelope to Summer and we opened it together on the couch. There were no cards, but instead several pieces of paper, a couple of receipts, and two cards that looked like they were from Flying J (a gas station chain). We were confused to say the least. We quickly read the first page and it essentially said the following: “We heard about Ammon and understand that he will probably be in the hospital for some time, so we wanted to do something to make it easier. After thinking about it for a while, we thought it might be helpful if we could get you some gas cards to pay for the fuel in your cars as you drive back and forth to the hospital. We put together a short letter and passed it around the neighborhood explaining what we wanted to do and if together we might be able to purchase some gas cards. We gave a short deadline and people have been dropping off money at our house non-stop for the past few days. We were actually quite surprised about the incredible response and how much was donated, it far exceeded our expectations. You’ll find in the envelope two gas cards, one for each car. Each gas card contains well over $200 (around $500 all together). Thank you for letting us serve you and be part of this miracle.” It was signed by these three wonderful girls. Summer and I were obviously beside ourselves. I kept looking at the receipts and turning the gas cards over and over in my hands. It took us a half an hour to regain our composure before we could walk down to their house and somehow tell them thank you. I remember KyAnn stressing to us on that day that these girls came up with the idea, drafted the letter, purchased the gas cards, and everything else all on their own. They just couldn’t get over the response from so many people and had no idea it would be this big so quickly.

At the time I’d thought this was miracle enough, we had already been so greatly blessed, but here’s the interesting end to this story. For over two months Summer traveled daily, sometimes two or three times a day, to be with Ammon at the hospital. The drive was a little over a half hour each way from our home (when I drove to the hospital after work it was still about a half hour past our home). On the day after Christmas when we were going to the hospital to pick up Ammon and bring him home, the tank was empty and we stopped for gas. Almost without thinking at this point I slid the gas card into the reader and pumped the gas. I stood there in the cold brisk wind, pumping the gas, and eagerly thinking of being with Ammon. The receipt printed out and I noticed that the funds on the card had been depleted. I stared in stunned silence at the receipt and again just turned that gas card over and over in my hand. The card had perfectly paid for all the fuel that was required, right up until the last tank, for the last drive, for the last time we would have to travel to see Ammon instead of just being with him at home. I’ve thought many times since how interesting that was, and it is interesting isn’t it. Miracles many times have a way of making us think, and stand back in awe, even those miracles that involve three special young women, a neighborhood of good people, and a couple of gas cards.